title: Does website-based information add any value in counseling mothers expecting a baby with severe congenital diaphragmatic hernia?
abstract: OBJECTIVE
  We aimed to measure whether website-provided information about congenital diaphragmatic hernia (CDH) and fetal therapy for severe cases provides added value compared with clinical counseling of parents.
  
  
  METHODS
  This is a single center study in 102 couples who earlier opted for fetoscopic endoluminal tracheal occlusion (FETO) because of isolated severe CDH. They were asked to fill out an anonymized web-based survey of 12 questions. Then, they were offered access to information on the web pages of the randomized Tracheal Occlusion to Accelerate Lung Growth (TOTAL) trial. One week later, their appreciation was measured again by a second questionnaire.
  
  
  RESULTS
  Eighty-two (80%) parents completed the first questionnaire, and 48 (47%) completed the entire survey. Several items became more clear to the parents after reading the website, such as the length of hospital stay (23.2% prior to web information, 60.4% after; P = 0.004), maternal risk, or the requirement of fetal anesthesia for FETO (43.9% resp. 79.2%; P = <0.001).
  
  
  CONCLUSIONS
  Complementing prenatal counseling on CDH and FETO by standardized information via website is perceived by parents as of added value. Maternal risks and the need for fetal medication need more clarification during the verbal counseling prior to prenatal interventions.
authors.affiliation: Centre for Surgical Technologies, Faculty of Medicine, Katholieke Universiteit Leuven, B-3000, Leuven, Belgium.
authors.forename: Alexander C
authors.initials: AC
authors.lastname: Engels
authors.forename: Philip
authors.initials: P
authors.lastname: DeKoninck
authors.forename: Johannes L
authors.initials: JL
authors.lastname: van der Merwe
authors.forename: Tim
authors.initials: T
authors.lastname: Van Mieghem
authors.forename: Petra
authors.initials: P
authors.lastname: Stevens
authors.forename: Beverley
authors.initials: B
authors.lastname: Power
authors.forename: Kypros H
authors.initials: KH
authors.lastname: Nicolaides
authors.forename: Eduard
authors.initials: E
authors.lastname: Gratacos
authors.forename: Jan A
authors.initials: JA
authors.lastname: Deprest
mesh_terms: D000328:Adult; D003376:Counseling / Q000379:methods*; D003625:Data Collection; D005260:Female; D046689:Fetal Mortality; D005332:Fetoscopy / Q000193:education* / Q000523:psychology; D006548:Hernia, Diaphragmatic / Q000401:mortality / Q000523:psychology / Q000601:surgery; D065630:Hernias, Diaphragmatic, Congenital; D006801:Humans; D016247:Information Storage and Retrieval; D020407:Internet; D009035:Mothers / Q000193:education*; D010353:Patient Education as Topic / Q000379:methods*; D011247:Pregnancy; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires